The Tale of the Terminated PhD

CW: mentions and discussion of mental illness and suicide (including an attempt), discussion and description of relationship abuse, mentions of rape and sexual violence, lack of support systems, ableism, police

I’ve mentioned a few times now that I had to quit my PhD early last year (the official termination date is 1 April 2019). I haven’t talked too much about why, though when I have I’ve given brief, and thereby necessarily simplified accounts. I’d like to write a bit more fully about why.

But first the TL;DR version:

So… why did I quit the PhD?

Because of seriously insufficient mental health support, and because I was mentally ill throughout most of it (depression and later PTSD). Because I was on medication which made me more suicidal. Because I was in an abusive relationship which took over a lot of my life and was raped by that same abusive ex partner (while we were still together) – the rape being what led to the PTSD. And the university’s domestic violence policy doesn’t account for grad students. Because I reported the rape to the police which was extremely re-traumatising. Because my PhD research was on issues of sex, ethics, consent/non-consent (and therefore rape) and so became extremely triggering. Because I only found out that I’m autistic and ADHD (i.e. disabled) more than two years into the PhD, and was only then able to start accessing disability support, which turned out to be mostly really ableist, trash, and not useful. Because I was on a three year scholarship (with a six month extension), and all of those other things added up to mean that in the ca. three years that I’d been working on my PhD by the time I terminated the programme, I had a more or less complete draft of only one chapter and the introductory chapter, and that was all. I had run out of time/funding, because my life and mental health had gotten fucked up.

The fuller account is a longer story, and in order to tell this story, I need to take you back in time a bit, to when I started my PhD, in February 2016. I also need to explain that when I was accepted into the PhD programme, I was automatically awarded a University of Auckland Doctoral Scholarship because I had gotten a high enough grade on my MA (I’d gotten an A, so first class honours). That paid for my fees, and it also paid me a stipend to cover living costs. A perfectly respectable amount on its own, though supplemented with the part-time salary I got during the semesters I was also tutoring,1 it was a very comfortable income indeed!

That first month of my PhD was great! I went in to the office pretty much every day, for a full day, and I worked from the office (I had an office – shared, of course, but still), and my idea was that I was going to do my work at the office and then leave it there and not feel like I still had to work on things once I got home, thereby giving myself permission to relax once I got home. It was great, I made good progress on my literature review. For a month.

I should also explain that starting around the same time (I don’t remember exactly when now, but around a similar time) and until November 2017, when I finally escaped, I was in a relationship with a man whom I will refer to as “the bad ex”. This relationship became increasingly abusive (mostly emotionally/verbally, though he also raped me and there was other sexual abuse/physical abuse in a sexual context), hence why I think of the end of that relationship as more of an escape than a breakup.

In addition to this, a few months before I started my PhD I had ended an eight year relationship (and we’d been civilly united for seven of those years), so I was grieving the loss of that relationship too. This also meant that I was living on my own for the first time… ever! As it turns out, I don’t do well living on my own. It turns out that living on my own is very, very bad for my mental health, as I was going to find out over the following two years!

By the time I started my PhD, my doctor had diagnosed me with depression (again – this wasn’t the first time) and put me on new antidepressants (which a community mental health psychiatrist would, a few months down the track, switch me off, to a different medication, because those new meds had made me even more suicidal!).

So, brief recap so far: started the PhD right after leaving an eight-year relationship, living on my own for the first time ever, new bout of depression, and on new antidepressants which were making me more suicidal, at the same time starting a new relationship which was going to become increasingly abusive! Oh, but that first month working on my PhD was great!

One month…

And then things started going downhill…

I don’t have a timeline of the rest of the three years. I can say that I stopped coming in to the office. At first I tried going in when I felt up to it (and sometimes when I was on campus for tutoring work anyway), and eventually I stopped trying. I tried working from home instead. Mostly that meant working from my PC, trying to read through whatever it was that I was reading, trying to write things that made sense, while at the same time trying to juggle/wade the through the hell that had become my life. Other times I would just lie in bed for hours on end, starting into space, reading (sometimes PhD material, other times other things) or trying to read and not taking anything in, and not sleeping because of insomnia.

When I was starting to look at options for quitting the PhD towards the end of 2018, I found out about terms like “termination” (quitting it), and “suspension” (putting it on hold for up to 12 months, which would also mean putting on hold the scholarship payments). The thing is… as 2016 wore on, and my mental health deteriorated further and further, I was barely working on my PhD at all. I kept postponing meetings with my supervisors. I kept sending emails with excuses. I couldn’t focus, I had no motivation. I had no desire to live, let alone try to write a thesis!

Had someone told me back then that taking a suspension was an option, so I could have taken the time I needed to get well… maybe that would have been what I needed. Of course, I don’t know if I would have seen it. It was also complicated by the fact that I was getting more and more involved with the bad ex (a relationship which got messier and more and more abusive, and in July 2016 I converted to Islam since that was the only way that we would be able to have a future together, though I tried to convince everyone, even myself, that I wasn’t converting for him)… but no one told me about that option back then.

But, was I getting help? Yes. I was seeing my doctor (my GP), and I was seeing the community mental health services,2 and I was seeing a counsellor at the university counselling service. Except, of course, like so many other universities, UoA has a limit on the number of sessions that students can have, in our case it was six sessions per student per year. Which, when there are students who have serious mental health issues, is simply not enough. The counsellor I saw was one I’d seen on and off for a number of years, and when she left the university to move away, she offered to keep seeing me privately (at a tiny cost, pretty much only charging me to maintain a professional relationship), via Skype because she felt that continuity of care was important. That way I was able to see her more regularly too. I can say without a doubt that if it hadn’t been for that counsellor it’s highly unlikely that I would still be alive now.

When I converted to Islam, I decided that I needed to change my thesis topic (originally “Virtue Ethics and Sex”) to reflect my new-found faith, so I could incorporate some Islamic perspectives. My supervisors advised caution, but I was determined, and so I started researching Islamic approaches to virtue ethics, as well as feminist Islamic ethics, and combining those to keep researching things to do with ethics and sex. It was all very interesting, but my mental health was still a mess and work was still very sporadic.

In February 2017 I took an intentional overdose of medication, in a somewhat miscalculated suicide attempt. I spent the night in A&E and the bad ex came to see me the next day while I was still in A&E before I got discharged. He tried to talk the nurse into admitting me to a psych ward. She had to explain to him that that wouldn’t be a good idea.3 He walked me to the bus. On the bus home I emailed my supervisor asking him if we could postpone our meeting which we had scheduled for the next day, explaining that I’d just been in hospital (I didn’t say why). He said that was fine, and told me he hoped I would feel better soon.

I can’t remember when it was that I eventually told my supervisors about the mental health situation (though not about the suicide attempt), and about how difficult it had been to do any work. I can’t remember now what the suggestions were, though I remember that they were very kind about it.

I think it was in May 2017 that my main supervisor left to take up a new position overseas, so I got a new supervisor from the religious studies department and she and my then co-supervisor became my joint co-supervisors.

I don’t have an exact date, but sometime between March and the end of September 2017 the bad ex raped me. Trauma fucks with the way our memory works, and I don’t want to get into that part now. I wasn’t even able to acknowledge to myself, or at all, that it had been rape until early 2018. I was reading a book about abusive relationships, and there was a checklist in it, of things that abusive partners do, and one of those items was around sexual things and non-consent. And going through that checklist, I shutdown for about two days. I hid in my room, in bed. I kept thinking about that time he raped me (though I still couldn’t think that word). I can’t remember who I talked to about it first. The police report says my counsellor. I think it might have actually been my flatmate, though it’s possible it was one of my sisters. I don’t know if I’ve ever told my flatmate how grateful I am for how supportive he was in his response, just being there, listening, and believing me. When I did tell my counsellor (who I was still seeing via Skype until late January/February 2018), she was the one who first used the word rape. I still couldn’t.

But, I started to get better. In November 2017, about a week after I’d moved in to an apartment with a friend/fellow PhD student, I ended things with the bad ex.4 Via text. I will make no excuses for that. I don’t give a fuck how many times he begged me to see me “just one more time” because apparently breaking up via text is so fucking heartless. When the relationship is abusive, fuck it, I don’t give a fuck.

So, back to getting better. Having a flatmate was (and still is, though in different ways now) great for me! It helped me establish a sense of routine in those early days. I’d had no sleep schedule for so long that I started to feel guilty when I was still up late at night after he went to bed. I started going to bed at reasonable times. I got up early. I started going for regular walks in the mornings. I can’t remember now if I started feeding myself real food, but, y’know, baby steps. The exercise, the sleep schedule, the regular peopling (even in small doses)… it was amazing. I was feeling great. Even stopped seeing my counsellor eventually (by mutual agreement).

And then I decided that it’d be a good idea to report the bad ex to the police.5 Suffice it to say that the experience was extremely re-traumatising and that they decided not to prosecute because of a “lack of evidence”. I started seeing a new therapist under ACC Sensitive Claims in April 2018 (around the same time I first saw the police). I am still seeing that same therapist now.

Sometime in mid-2018 I deconverted from Islam again. I had, while Muslim, been very committed. I had read through an entire English translation of the Qur’an and studied it thoroughly, I’d learned to pray and was working on praying regularly, in 2017 I’d fasted for all of Ramadan, I wore a headscarf… but in the lead up to Ramadan in 2018, I was starting to realise that I hadn’t been able to pray anymore. Anything to do with it, was too triggering for me.6 In terms of my PhD thesis, this meant another change of topic.

And my deadline was fast approaching. The PhD programme is meant to be three years fulltime (which is the amount of time which the scholarship is funded for, though a six-month extension can be applied for).

And then, in mid-2018, another spanner/ray of hope got thrown into the works. I found out that I’m autistic! I had previously had no fucking clue!! (I mean, now it’s obvious as fuck, but nope, no clue!) It was good timing because I happened to have the money to actually pay for a private assessment at the time (what with the scholarship money, and money saved up from previous tutoring work)!7 And then, at the end of 2018/early 2019 found out that I’m also ADHD, but getting ahead of myself there.8

This was great news insofar as it meant that I could get a referral to the university disability services, who referred me to the student learning services. Who… turned out to be trash. Like, calling executive dysfunction laziness and telling me to just try harder kind of trash. But first, I did get help drawing up a bunch of schedules and deadlines for myself, which were going to help me get the rest of my thesis (newly planned out chapters and subsections, what with the newly reverted back to “Virtue Ethics and Sex” topic – no Islam) finished within the fuck all time I had left.

What this brilliant plan didn’t account for, of course, was PTSD. And the fact that the material I was working on was mostly to do with sex, ethics and sexual consent (and therefore also non-consent), and so yeah, sexual violence! And holy moly, that shit was triggering as all hell!

I mean, I remember a conversation I had with my former main supervisor (before he up and moved overseas) where I was ranting about fucking philosophers insisting on using the fucking generic masculine in their writing… and yeah, sure, that’s a pain. But I can fix that. I can degender anything I read if I need to quote their shit work. But that’s nothing compared to reading an actual book on rape/rape culture, and reading quotes from judges in the not so distant past, in this very country, where they talk about how if every man stopped when a woman says no, the world would be a lot less interesting (paraphrasing from memory here, but that shit sorta sticks in your head!!).

In August 2018, I had been doing some work with my former MA supervisor, who’d come on board my “supervisory team” as an advisor, specifically because of her expertise in virtue ethics, and after having just drawn up these great schedules with the help of disability services and student learning services, and then missing one of my (self-imposed) deadlines… she bluntly tells me that if I don’t pull my shit together quicksmart, I should probably drop out/come back to it when I’m in a better place. And that conversation hurt. I cried, a lot. I wasn’t ready to hear it. I had a schedule! Yeah, I’d missed a deadline, but I was sure that I could just make this work by sheer force of will.

Reader, I could not.

I mean, I did do some more good work over the following months. Maybe some of my best. I presented at the department Work in Progress Day and won two, out of four, audience voted prizes (best Q&A and most novel/unique research – my flatmate, a fellow PhD student, said I probably had a bit of an advantage, since I was talking about sex). One of the questions in the Q&A started a conversation with another fellow PhD student, which lead to what I consider to be some of my most important work yet (and I still consider his argument to be abhorrent).

And yet I know that my advisor was right. My brain was fucked. I don’t know if she knew about the PTSD. I just emailed her recently to thank her for that conversation, since I was finally in a place to be able to, and to find the words to, thank her for that. And neither of us can remember if I’d told her about the PTSD. I know I’d told her about the bad ex. But it doesn’t even matter, really, what she knew about. She was right. If I’d dropped out/put it on hold then, maybe I could have taken a break (a suspension) for a year, and come back to it in a better headspace. As it is, I pushed myself too far.

When it finally came time to make a decision about the future of the PhD, it had gotten to the point where I didn’t feel like I had a choice. There was hardly any time left that I still had funding for, and I wasn’t going to be able to write four or five chapters in six months (and do whatever research I still needed to do for those chapters). Even if I took a suspension at that point, coming back to it after a year didn’t make it feel any more realistic. I’d backed myself into a corner.

I don’t know if I’ll never go back to academia again (I don’t want to say that, because who knows, I might), but I certainly don’t intend to for the foreseeable future. As my supervisors said when I left, the research I did isn’t going anywhere. It’s still there, in my notes, in the things I wrote, so if I ever want to pick it up again, or do something with it, it’s still there. But for now, I don’t.

I feel like I need some kind of “ending” to this… not necessarily a “happily ever after” (there isn’t one, as yet, I still don’t have a clue what I’m doing with my life, but sure as hell not academia things!). But some way to wrap up this story to not leave it just… hanging there.

But, I guess the thing about this story is that it left me hanging. After quitting the PhD, I… floundered. I had nothing to do, and I have only in the last few months been starting to find things to do again. Mental health things got worse again before they got better (turns out quitting a PhD brings quite a sense of loss, which can bring on another round of depression). Therapy has helped, and is still helping. But there is no “end” to this story, I don’t think, because this story is my life, and this is only part of it.

1 I think the tutoring (Graduate Teaching Assistant) work will need a separate blog post of its own. Suffice it to say that in the semesters where I did also do tutoring work it hugely added to my stress levels and was not good for my mental health.

2 Whom I had several terrible experiences with, and only recently found out that on three occasions during this time they filled out forms about me which included questions about family violence which they did not ask me… on some of these forms the answers are blank, on others they’re filled out with “no” as though they had asked me, but they never did. And I have tried making formal complaints about this, but so far nothing has come of it.

3 She would’ve been the one who filled out the last of those three forms (the one dated most recently), the forms with the questions about family violence on them. And she saw and spoke with the bad ex.

4 I discovered a while ago that UoA has a domestic violence policy (I don’t know if they’ve updated this in the meantime since I last read it, and tbh, I don’t have the spoons right now to read over it again) to support students and staff who are leaving abusive relationships. However, this policy doesn’t really have any room for graduate students who are in the sort of position that I was in. For staff, there are things in place about taking time off, for students there’s things about taking classes off… but what about those of us who aren’t teaching, and aren’t taking classes… who are working on, say, a thesis, but only have scholarship funding for a limited amount of time…?? There’s nothing in there for us.

5 I have a lot of big, complicated, and messy feelings about this now, so this will likely be another blog post, so I won’t get into whether or not it was a good idea here, nor my reasons for doing so.

6 Again, this is something I will likely write more about in another post. I do just want to be clear that I did not deconvert out of any ill will I feel towards Islam as a religion, or towards Muslims. I believe that Islam, like all other religions, is not monolithic, and is as varied as the views of the Muslims who live and practice the faith. I deconverted because I came to admit to myself that I did not believe, and because engaging in the practices, such as prayer, was triggering for me, because of the trauma associations with the bad ex. I hope it is clear that I do not see the bad ex as being in any way representative of Muslims!

7 Public funding is only available for childhood diagnoses, or for adult diagnoses for those admitted to hospital for psychiatric reasons, if I remember correctly. Of course, this means that a lot of people (especially those of us who are not boys, not cis, and those who are not Pākehā) get missed in childhood and then have to pay out of pocket for the private diagnosis. And we are often less likely to be able to afford them.

8 My GP referred me for the ADHD diagnosis when I was about to leave uni, and at that point I had fuck all money, and getting that done privately was not really something I could afford. I’ve since found out that it is possible to get it done through the public health system, but she didn’t do that referral, which I’m very pissed off about. Also, the first psychiatrist she sent me to gave me ADHD meds but no diagnosis. I didn’t like him. I found myself a different psychiatrist after that.

Lateral Ableism Makes Everything Very Much NOT Okay

CW: discussion of ableism (especially lateral ableism) – particularly functioning labels, nonconsent, sexual violence (including rape), and reference/links to lateral… queerphobia/homophobia/biphobia/transphobia (gold star lesbians)

I recently had an exchange on twitter with one of the main actors of the show “Everything’s Gonna be Okay“, who as it turns out is also the show creator (Josh Thomas). It all started when I took to twitter to voice my displeasure with how the show had handled another main character, Matilda (who is autistic and played by Kayla Cromer, an actually autistic actor) having sex, and the ensuing discussions around nonconsent and disability.

But my main (albeit related) issue was around the use of language, and as I said in my tweets, I actually stopped watching when Matilda says “I’m high functioning, it’s not fair!”. At this point Thomas responded to my tweets telling me to “… maybe finish the episode?” in a tweet he later deleted.

I did. And I regret doing so, as I said when I responded (in a new tweet, tagging him because of the tweet deletion). And he responded to me, but it’s taken me several days to find the words and the spoons to be able to respond to what he said.

There were two parts to his response:

“The reason why I said to keep watching it is because Matilda makes the same points you’re making, and Nicholas and Genevieve realize they’ve probably been ableist.”

I never actually saw this, and I suspect that it’s not actually in the episode I stopped watching but in the next one which I could now watch this week, but honestly after how this was handled (especially the language issues), I am done with this show.

“Re function language: we had three consultants with different views, so I let our actors (who are autistic) use whatever language they wanted to.”

This is the core of what I want to address. Firstly, Thomas doesn’t specify if the consultants were actually autistic. However, even if they were (I know there are diverse views within the autistic community, though the vast majority of us detest PFL – person-first language – and functioning labels), the point he absolutely misses here is the issue of lateral ableism.

So, what exactly is lateral ableism? The simplest definition is that “lateral ableism is when a disabled person is ableist towards another disabled person”.

So let’s see how this actually plays out here. The thing with functioning labels, of course (as many people have written about before – I’m sure you’re able to google this), is that those of us who are labelled as “high functioning” are denied the supports that we do actually need, whereas those of us who are labelled as “low functioning” are considered so disabled that we’re unable to do, well, anything. Work, study, live independently, have relationships, and perhaps the key one here: consent to sex!1

Let’s use an analogy. Josh Thomas says that they let their actors use whatever language they wanted to. So, if they had a lesbian actor on their show who made a point of calling herself a “gold star lesbian”, would he be ok with that? Or would he take into consideration the myriad problems that people have been pointing out with that for some time?

And of course, he might have been fine with actors identifying as “gold star lesbians” on his shows, I don’t know, though that would rather entrench the problem, I’d say.

Updated to add (another analogy):

Most of the time when I go out, I have one of my snuggly dragons or my snuggly octopus with me (they are very stimmy). I have found that a lot of the time people will see the snuggly toy and proceed to talk to me like I’m a child. And there are times I want to grab them and yell “I’m NOT a fucking child!! I have a fucking Master’s degree (and I would have a PhD if it wasn’t for the PTSD situation)! I am fucking intelligent! Stop talking to me like I’m a fucking child!”

And then I stop myself.

Because it’s exactly the same as the functioning labels. Someone who is not “intelligent” (by what measure, anyway?!), someone who doesn’t have a graduate degree, just like someone who isn’t “high functioning” isn’t any less deserving of being treated as the adult they are; of being presumed competent.

I rarely say anything in situations like that (it’s usually just in passing anyway, in a store, or on public transport, or so). But if I ever do, I would make sure not to appeal to any measure of lateral ableism. Because there is nothing about me, nor about anyone else that makes me more deserving of being presumed competent, just like there is nothing about Matilda that makes her more deserving of having her consent taken seriously.

I absolutely get wanting to let people use the terms of identity that we choose! This is important and in most cases I would support this. However, in some cases there is actual harm being done, especially when the person has a significant platform (like being an actor on a TV show, one of the first to be acting as an actually autistic actor playing an autistic character), and allowing them to use that platform in a way that harms their community… is not great.

I could live with the PFL (just like I swallowed it when I saw Hannah Gadsby’s amazing show Douglas, which I can’t wait to see again when the Netflix special comes out), even though I have very strong feelings against PFL. But using functioning labels, especially in a way which insinuates that her consent ought to be valid because she’s “high functioning” (as though it shouldn’t be if she weren’t) is just too far.

Learn about lateral ableism. And do better.

And in future, don’t EVER tell an autistic survivor of sexual violence (and far, far too many autistics are) to continue to watch something that deals with sexual violence and/or ableism when we have explicitly said that it deals with it in problematic ways and don’t want to/don’t feel comfortable to continue watching it. You might think it gets better/the rest of whatever it is redeems the problematic aspects, but you are not in a position to make that call/that suggestion for someone who has experienced trauma (and yes, being disabled in a world not designed for us, facing constant everyday ableism is a form of structural, systemic trauma, quite aside from the trauma of sexual violence).

1 Because yes, the line was said by Matilda when they were talking about whether or not she could consent to sex. And of course, the idea that’s raised by Genevieve (Matilda’s younger sister) and Genevieve’s (bitchy/bullying) “friend” that the guy Matilda had sex with practically “raped” Matilda because she (Matilda) was drunk, sad/crying, and… autistic… is utter bullshit! Yes, alcohol/being drunk makes the whole thing blurry. Being sad… OMFG, seriously, how many allistics (of any gender) have had sex when sad and had it be completely consensual?! And the autistic part… well fuck, there’s your great big helping of ableism right there. (Also note that Matilda is the one who initiated the sexual encounter!)

But what compounds it all is the “I’m high functioning, it’s not fair!”, which Matilda later bursts out with to her older brother (Thomas’ character). Because, no! Even if she wasn’t “high functioning”, that wouldn’t invalidate her consent.

Please Stay in Your Lane; or, when empathy goes wrong

CW: ableism, racism, (mention of female genital mutilation, because of a link to a tweet – specific CW at the link too), misunderstanding/erasing of others’ gender identities

I have noticed something happening in a few different spaces recently. Or rather, I’ve come across something a couple of times recently in other discussions (regarding gender and race) which I’d previously only seen in discussions about autism.

I’m sure pretty much all autistic people will be very familiar with this conversation:

Autistic person: “I’m autistic!”

Allistic person: “Oh, we’re all a little bit autistic!”

Autistic person: [internally facepalming, trying not to scream…]

Because, of course, as we all know (and if you didn’t, now you do!) we are, in fact, NOT all “a little bit autistic”. Yes, being autistic is talked about as a spectrum1, but no, that does not mean that it is a spectrum that we are all (including allistics) on! Allistic literally means “not autistic”! Not even a little bit. Nope. Not even a crumb. Nothing. Just nope.

The best explanation I’ve seen in response to this trope is that while we know that there are different things we think of as being “signs” of being autistic (I don’t like to say “symptoms” because that’s medicalised language). Like, we love routine, dislike change, we have our intense autistic interests (and will infodump about those, given the opportunity), are often not great with social cues, we stim, we tend to be introverts, etc., etc. A lot of people who aren’t autistic might also love routine, and yes, everyone stims (even allistics2), and everyone fucks up in social situations sometimes…

And you know how there are various symptoms that go along with pregnancy? Nausea, swollen ankles, needing to pee often, all sorts… Thing is, a lot of people who aren’t pregnant get nauseous, have swollen ankles, need to pee a lot (UTIs, anyone?!)… and you don’t really hear people looking at the swollen ankles, or the nausea and saying “oh, well, we’re all a little bit pregnant!”

Because, well… that wouldn’t make sense!

So, that’s the autistic case, which us autistics are very familiar with.

And now I’ve come across it in other areas too.

First, a few weeks ago, there was the (quickly deleted, though the internet never forgets – and CW for that link for mentions of female genital mutilation) egregious tweet from National Party MP Judith Collins, where she claims to be a “woman of colour”, that colour being white (yes, she’s a Pākehā woman).

I think this fits into that same mould. We are not all people of colour.

Sure, if you’re going to be pedantic about it, white is a colour, but if we’re talking about race (which we are here) then that becomes ludicrously irrelevant! The point is, of course, that white people (here in Aotearoa, Pākehā people) have white privilege, and POC don’t! As white people, barging in to try to co-opt the identities of marginalised people… I mean… have we not done enough damage?! Have we not taken enough?!

It’s just like the Pākehā blusterers at Ōwairaka calling themselves mana whenua, when they most decidedly are not. We need to stay in our lane.

And now, the most recent example: “we’re all nonbinary”.

I recently told someone I care about a lot (but am not in frequent contact with) that I’m in the process of figuring out my nonbinary identity and coming out as nonbinary, and this is what they said in response (along with other things too).

It felt jarring to me, though it’s taken me a while to figure out why (though I immediately felt the parralels to the way allistics respond to autistics!)… and it’s because no, no we’re not all a bit nonbinary.

I think the jarring thing for me is that it feels like it’s trying to empathise, but missing the mark. Like, I’m picturing someone coming in for a hug, and instead they end up hugging your neighbour three houses down. (And that neighbour is probably seriously confused about where this hug came from out of nowhere!!)

Because (let’s go with this hug thing!), giving me a hug (let’s say that’s what I’d asked for) would’ve been to say something like “congratulations, that sounds exciting” (which, incidentally, is exactly what my psychiatrist said, when I told him in passing) or whatever. But my neighbour is going “um… nope… how did I get dragged into this?? Why are you telling me that I’m nonbinary?! I’m not! I’m [insert binary gender here]! Also, who are you even?!”

I think I used to (perhaps only briefly) think similarly about bisexuals, but I quickly realised that that too isn’t true. While I know that gender is a social construct (which is a big part of how I’ve been figuring out my nonbinary gender identity), the fact is that our social construction of gender nevertheless makes gender real, just like how race isn’t real (in the sense that race scientists believe it is), but is a social construct, but that social construct is what makes it real, and it informs and, well, really just forms a great many, if not in fact all of our lived experiences.3

In much the same way, gender is real, while also being socially constructed. And while some of us are indeed nonbinary4, some people just aren’t. Some people very much do identify with the gender they were assigned at birth and are very, very comfortable in their (very binary) gender expression. And that’s ok. And some trans people who don’t identify with the gender they were assigned at birth are also very much not nonbinary, but rather identify very much with5 the opposite gender to that which they were assigned at birth. Those binary experiences and expressions of gender are no less real and valid than my (and others’) nonbinary ones, so I think it is important not to erase them, however unintentionally.

And while I think we would all benefit from examining (our own, and the social construction of) gender more closely, and questioning if we are actually comfortable with the gender we were assigned at birth as our gender identity, and also consider explicitly our gender expression (and not just shrug and swallow whatever cultural norms we’re fed by media, religion, culture, peers, family, whatever), that doesn’t change the fact that a lot of of people are, and will continue to be, very comfortable with a binary gender identity and expression.

1 Here is a useful comic to explain the spectrum idea. Please note that while it does have alt text (I had a listen through with my screenreader on my phone), the alt text only reads through the text in the speech bubbles, so it doesn’t give the full description of the comic. The important things it misses are that when it says “Archie you can handle all of this just fine”, it shows a large hand pushing Archie (the cartoon child/person wearing glasses) towards a LOT of words of varying sizes and fonts which say: new situations, “smart” tight clothing, don’t stim, too much noise, lack of routine, “loadsa conversations”, “all at once”, don’t fidget, be more organised!

Underneath, when it says “How can you be tired?” it shows Archie looking very overwhelmed, covering his ears, with lots of large words (most cut off at the ends, so can’t read most of them) around him.

The other most important part is that when it says “You see, the autistic spectrum looks something more like this. and then “circle with lots of attributes”, that “circle” is a colourful circle (like a colour wheel), and the attributes are written around the edges: language, motor skills, perception, executive function, sensory (though in the next panel, “sensory” is called “sensory filter”).

2 Except when allistics stim they tend to call it “fidgeting” or call stimmy things “grounding” instead because… well, fuck knows why!!

3 Though, as with all of these kinds of things, privilege often allows us to not see how such social constructs inform and form our lived experiences – for example, I will often be much more blind to how me being Pākehā informs and forms my experience of the world than a person of colour will be to how their experience (as a person of colour) informs and forms their experience of the world.

4 (in whatever way we apply that term to our experiences, whether it’s to mean that we fit outside of the gender binary – as I do, or across/along it, or identifying with both, or something else)

5 I realise, of course, that it’s problematic to use the language of “identifying with” a gender identity, instead of saying that the person in question is that gender. I couldn’t figure out how to phrase it in the way that I wanted to without using the language of identity. I do know, of course, that trans women are women, and trans men are men, and do not merely identify as such!!

Image from Pixar's film "Inside Out" (2015) showing the characters Sadness, Anger, Fear, Disgust, and Joy (personified emotions of the main character, Riley), all looking various degrees of shocked/horrified, standing at the controls in her minds "Headquarters".

My Neighbours Upstairs (Hi, Brain!)

CW: mental illness, mentions of suicide, paranoia, use of “crazy” and similar terms (in reference to myself, in a therapy context)

So, I’ve written before about seeing a therapist, and I know that I’ve talked about having PTSD and depression, and I’ve talked about suicidal feelings in the past (not as much of a feature currently, though there are occasional spikes).

One fun feature of PTSD (and I think I’m going make that bright red as a sarcasm flag, because I find it useful for sarcasm to be clearly pointed out, since – being autistic – I don’t always pick up on that!) is that my brain sometimes engages in things like hypervigilance, paranoia, plus other things often associated with extreme anxiety (and this is quite aside from the side of PTSD that involves extreme irritability and angry outbursts, which I’m sure I’ll write about another time).

So, I think what I’m getting at is that my brain is not a fun place to be a lot of the time, but that makes sense, considering that it’s deeply traumatised (that’s the T in PTSD).

Today I was telling my therapist about one of these paranoid notions my brain had thrown at me a few days ago (I kept interrupting myself to reiterate how hard it was for me to even say the thing out loud because saying it made me feel “batshit crazy”1), and after she listened to me, she told me about an analogy she likes to use (I like analogies!).

She told me that she likes to think of our minds as well-meaning but meddling neighbours/relatives, who come knocking on our door to tell us about something that’s really none of their business (say we didn’t take our bins out, or they’ve noticed we’ve had a lot of “gentlemen callers” lately) but they wanted to come by to express their concern… and she asked me how I would respond to such a well-meaning meddling relative or neighbour. I said “well… we both know that I have very strong opinions about good intentions… [we both laughed at this point] so I think I’d try to find the politest way possible to tell them to fuck off!” I thought for a moment and then continued, “and depending on how preposterous the thing they’re trying to meddle about is, I might be less polite…”

We talked some more, her pointing out that the meddlers in this instance are, well… my brain, so to consider where the intentions are coming from, and also (I don’t recall which of us pointed this out) that the meddling is coming from a place of trauma.

Oh, right, I think she asked me (I can’t remember if before she brought up this analogy, or during the analogy conversation) what my brain was trying to achieve by feeding me this paranoid notion that I’d told her about. I told her that sarcastic me would say “to fuck with me”, but rational me realises that it’s to protect me… which is a pain in the ass (the latter point), because, of course, there are so many better, more effective, and less, well, paranoid ways to protect me, that don’t cause me needless anxiety! So, sure, my brain has good intentions, but honestly, Brain, can you fuck off already sometimes?!

So, with the idea in mind that my neighbours upstairs (i.e. Brain) is coming from a place of trauma in my case, that would suggest that I ought to respond with some level of compassion (which also ties into our notions of self-care and being kind to ourselves).

Then she told me another story (a true one this time, not an analogy).2

When she was living in Sydney, there was a homeless man who would go around warning people that there was an alien invasion coming and that they needed to get out of Sydney, because that was going to be the centre of the alien invasion. People responded to him in all sorts of different ways (mocking him, ignoring him, but some also with kindness and compassion), and my therapist said that what struck her was that what he was doing was a very brave thing. Sure, it was paranoid and delusional, but (while yes, it’s possible that he was stuck there and couldn’t get out himself) considering that he seemed to genuinely believe that Sydney was a NOT SAFE place to be and that everyone should evacuate, the fact that he was staying there to warn people, despite the unkind responses he often got, was in a way brave (especially since it’s quite likely that he was coming from a place of trauma).

So, while she’s not saying that we should entertain paranoid delusions, responding to them (especially when they’re coming from a place of trauma) with kindness is the right thing to do. I don’t need to berate my upstairs neighbours and yell at them to fuck off. I can invite them in for a cup of tea (peppermint tea is very calming), tell them I understand their concerns (maybe write about them), and tell them what I’m going to do to keep all of us safe.

Sure, my upstairs neighbours are still going to keep coming back with more freakouts. That’s just part of the deal with PTSD.

At the end of the session, I told my therapist I’d have a think about this, maybe with the upstairs neighbours, and she joked that I can have a committee meeting. I asked her if she’d seen the movie Inside Out (I like it very much!) and she had and also likes it.

I guess to me, perhaps I can look at it as PTSD having moved in another “committee member” (I’m not sure what I’d call them… maybe just “trauma” would do), or alternatively we could say that PTSD really badly fucked over the committee members that were already there… and perhaps the upstairs neighbour that’s causing issues in this instance is Traumatised Fear. I guess both ways of looking at it work.

Either way, I need to be kind to my upstairs neighbours, and not be the dismissive bitch I find it so easy to be… it’s a work in progress.

1 And I feel ok saying that/reclaiming that slur, since it’s a slur used against mentally ill people, and I am mentally ill.

2 I have her permission to share both the analogy and this story.

Credit for the image (I haven’t read the article, this is just where I found the image).

Janet: A nonbinary autistic icon

CW: mentions of mansplaining, and descriptions of negative responses to coming out as nonbinary

Ok, I am going to start this post with a song I came across today on Spotify, but here is the Youtube version:

The Good Place Song: “Pobody’s Nerfect” by Whitney Avalon
The lyrics are here.1
The video shows Whitney Avalon (I assume) singing and dancing, dressed like the character Janet, from The Good Place (navy pencil skirt and vest, white blouse with light blue pattern and frill out the front over the vest). She’s white and has long, dark brown hair. At times there are three of her in a row.

This song is a tribute to the TV show The Good Place (which is great, I highly recommend it!), and in particular to the anthropomorphised informational assistant, Janet. As soon as I heard this song I fell in love with it (and I’ve gotta be honest, it wasn’t till I looked it up on youtube that I saw that the title/lyric actually says “pobody’s nerfect” and not “nobody’s perfect”!). So, that, plus some other recent developments, inspired me to write about Janet, The Good Place, and a few other things today.

So, to start with, one recurring thing in the TV show is that Janet often says that she’s “not a girl” (one of the other characters often refers to her as a/his girl). For the longest time I figured that this is just because she’s not human, and therefore doesn’t fit into human ideas of gender. Recently, I’ve come across a number of memes and FB posts about Janet being nonbinary, which make complete sense to me though! I mean, whether it’s because she’s not human or because, as whatever she is, she doesn’t identify as fitting into a binary gender (and she is very consistent about not being a girl, or a woman, even though that’s how she presents), I don’t think it really matters. Either way, she doesn’t fit into a binary gender identity, and if that’s not what nonbinary is, I don’t know what is!

Now, there’s also another thing that struck me about this song, and that’s the number of things I identified with on an autistic level… I know that Janet knows everything about everything, whereas us autistics tend to know everything about our autistic interests, rather than about everything, but I’m sure a lot of us (like me) have been called “walking dictionaries/encyclopaedias”, I’m sure a lot of us are good at and/or enjoy research… and even though there’s this persistent myth that we don’t have empathy, the truth, as we know, is that the vast majority of us have a LOT of empathy, often feeling too much even, so lines like “helping is my passion” and “I’m the Janet with a plan and it’s to save the human race” feel very autistically empathetic.

Also, I love the line “Yes, I’m always smiling but don’t get the wrong impression/I will ruin you while I maintain this facial expression”, because OMFG, how many of us have our facial expressions read wrong, have blank faces, etc…

My only mild quibble with claiming Janet as an autistic icon is that we’re often accused of being “robotic” already, and claiming someone who is something of an AI seems… unwise…? But then, I think the point, really, is that (well, she often says she’s “not a robot”, much like she’s also “not a girl”!) and the whole thing with people calling us robotic is that ridiculous “autistics don’t have empathy” myth, whereas here I’m wanting to claim someone who specifically does have empathy, and feels things, so I think that counters that…

So, all of this together brings me to something which I’m sure has come up before, but which I want to bring up again, in light of something which came up recently:

I recently started coming out to people around me/close to me as nonbinary. I’m still in the process of figuring this out, but this is something which feels very right to be. I’ve had quite a mixture of reactions, from overwhelmingly positive, to absolutely nothing, to being essentially told that it’s just a phase (and to that latter one – honestly, even if it is, and I’m not saying it’s not, because I do believe that gender is fluid, why the fuck does that matter, and why the fuck would that mean that anyone should treat me with any less respect and not use my correct pronouns for me?!). Speaking of pronouns, I am currently trying out they/them pronouns to see how that feels for me.

Now, I’ve known for quite a while that there’s a lot of overlap between the LGBTQIA+ community and the autistic community (in particular that there are a lot of queer and trans2 autistics), and as someone who’s identified as bi/queer for several years now I’ve been part of that overlap (in terms of sexual orientation) since I found out that I’m autistic last year (well, I was before that too, I guess, but I didn’t know, because I didn’t know that I’m autistic!). But now that I’m also figuring out the whole being nonbinary thing, I also fit into the trans side of that overlap.

And then I found this song, which feels like an anthem for nonbinary autistics, and made me realise that Janet is totally a nonbinary autistic icon, and it made my day.

That is all.3

1 Hi there, I’m Janet. Depending on what dimension you’re in, I may look slightly different from what you’re used to, but don’t let that distract you from this important message.

I’m not a human, I cannot feel pain
I don’t have a heart, but I love just the same
I’ve evolved far beyond what other Janets can do
So don’t fork with me or I will fork with you
I’m not a girl, also not a robot
Ninety-nine trillion degrees, so yeah I’m smokin’ hot
I can’t die, so remember who you’re talking to
If you murder me I will reboot and THEN I’ll fork with you

I contain all knowledge
But pobody’s nerfect
I’m a walkie talkie
But pobody’s nerfect
I create life out of nothing
But pobody’s nerfect
Pobody’s nerfect, nerfect, can’t you see
Nobody’s perfect, except probably me

According to the research I just did into 2,453,660 songs, this one’s so catchy you’ll never get it out of your head!

I keep secrets, helping is my passion
I rock all shades of 70s flight attendant fashion
Yes, I’m always smiling but don’t get the wrong impression
I will ruin you while I maintain this facial expression
In a fight I’ll kick demons ‘cross the room
I don’t sell violins, but I’ll orchestrate your doom
In the Good or the Bad or the Medium Place
I’m the Janet with a plan and it’s to save the human race

I’m high in potassium
But pobody’s nerfect
I’m an amazing jazz drummer
But pobody’s nerfect
I can explain the time knife
But pobody’s nerfect
Pobody’s nerfect, nerfect, but actually
Nobody’s perfect, except probably me

If they call me Helper Woman I don’t get mad
Busty Alexa? Still wrong, but not half bad
If they want me to appear, they can’t sobriquet it
My name is J-A-N-E-T and don’t you dare forget it

I always pop up in whatever direction they’re not looking – it’s fun!

My void is boundless
But pobody’s nerfect
I count as carry-on luggage
But pobody’s nerfect
Again, I can literally create life, and I use the passing of time as a lotion, like a god
But pobody’s nerfect
Pobody’s nerfect, nerfect, but seriously
Nobody’s perfect, except probably me

I could lie, but here’s something totally true
If you touch my friends then Schur as shirt I’ll forking fork with you

2 I leaned recently that “trans” is an umbrella term which refers to anyone who isn’t cisgender (“cisgender” referring to people who identify with the gender they were assigned at birth). So nonbinary people also come under the trans umbrella.

Some people have tried to use “trans*” as an umbrella term, not realising/understanding that “trans” itself already is and umbrella term, or refusing to use/see/recognise it as such (“gender diverse” and “gender expansive” are also broader umbrella terms which I have seen used, though again, to me this discounts the existence of the umbrella term we already have). While I can, a little bit, see where that reluctance might come from – I find it hard to see myself as trans, since to me the word speaks of transition, and I don’t feel like I am transitioning in my gender – that isn’t what it actually means, and even if it were, language evolves, and that’s not how it’s come to be used.

Just like “bisexual” doesn’t mean “attracted to two genders only”, despite the prefix “bi” in the word – language evolves, and bisexual has generally come to mean “attraction to two or more/all genders”.

So, since I’m not sure what the correct term for transphobia but directed at nonbinary people (if there is one) is, I’m going to use transphobia to cover all of it…

3 Actually, almost all.

Last week while “debating” ethics (long story, but the scare quotes are appropriate – it felt a lot more like me being asked to mark first year philosophy essays again, in the guise of someone wanting to “pick my brain” and then proceeding to mainsplain the material to me…) someone asked me if I’d watched The Good Place, and told me that he thought I’d probably most identify with Chidi.

Chidi is one of the other main characters, who, before he died (this isn’t really a spoiler – the show is set in the afterlife) was an ethics professor.

Except… nope. Not at all. I mean, there’s one thing I identify with Chidi on a LOT, and that’s his indecisiveness! (ADHD brain ftw!) But other than that… he’s a black man (I’m a Pākehā nonbinary person) and yeah, he was an ethics professor… but he’s a Kantian!! And I am very emphatically NOT a Kantian!! I’m about as far from a Kantian as you can get! So no, I identify with Janet, much more!!

Also, if you didn’t already know, Janet is on twitter (yes, it’s a parody account, but it’s awesome), and you should totally follow her!